A Brief Insight Into Autism Diagnosis and Treatment by Christy Yoon, Special Education Trainee

In our rapidly changing world, autism prevalence is also growing. According to the Centers for Disease Control and Prevention’s latest report (2018), approximately one out of 44 children is diagnosed with autism in the United States. This is an increase from 2020, in which one out of 54 children was estimated to have autism. About two decades ago, one out of 150 children was estimated to have autism in the United States. So why are autism rates rising? There could be multiple factors contributing to this growing number. One of the factors is the improvements in awareness and response to autism and efforts being made to reach the underrepresented group.

Figure. Graph representing a steady increase in autism prevalence over the past few decades (Southwest Autism Research & Resource Center. https://autismcenter.org/new-autism-prevalence-rate-released-cdc).

However, despite this improvement and effort, there is still evidence of autism diagnosis and treatment disparities, especially experienced by children with autism or with high-likelihood for autism and their families across racial and ethnic minority groups and in low-resource settings. Recently, a few caregivers of young children with high-likelihood for autism, who were both from minority backgrounds and low-resource settings, shared such challenges. They were experiencing an approximately year-long waitlist for the child’s autism diagnosis evaluation and a lack of resources to receive a diagnosis and appropriate services. The common concern expressed by the caregivers was “wasting away” days, months, and potentially a few years without getting the services for the child and missing the time of optimal impact due to delay in diagnosis. These challenges point to the need to address not only the shortage of expert evaluators for early screening, but also identify services that could be provided for children with high-likelihood for autism during their uncertain wait time for the evaluation.

While the surging prevalence reflects an increasing awareness and response to autism, it also demands improved access, decisions and outcome measures of treatment for autism. As a Korean-American and being part of a Korean community, I have had the privilege of working with many Korean families of children with autism. Often, the caregivers have expressed the experience of “cultural clash” with providers (e.g., early intervention providers, ABA therapists) in regards to developmental milestones and childrearing practices, as well as language barriers resulting in a lack of effective communication and building rapport. Even if the child receives a diagnosis early in life, I recognized that these factors could become barriers to receiving effective treatments and thus impact the outcomes for these children.

These experiences combined have contributed to developing a strong understanding of the need to extend the findings of my research studies to improve access to autism diagnosis and meaningful treatment outcome measures that are culturally responsive.

References

Autism Speaks. https://www.autismspeaks.org/science-news/new-study-shows-increase-global-
            prevalence-

autism#:~:text=The%20global%20increase%20in%20autism,ability%20to%20measure%20autism%20prevalence.

Centers for Disease Control and Prevention [CDC]. (2018). Prevalence of autism spectrum

disorder among children aged 8 years – autism and developmental disabilities monitoring

network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report, 67(6), 1–

23

Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., Christensen,

D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson, A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L., Harrington, R. A., Huston, M., et al. (2020). Prevalence of autism spectrum disorder among children aged 8 years — autism and developmental disabilities monitoring network, 11 sites, United States, 2016. Morbidity and Mortality Weekly Report. Surveillance Summaries, 69(4), 1–12. https://doi.org/10.15585/mmwr.ss6904a1.

The Definition of “Normal” in PT By: Ashley O’Donnell, Physical Therapy Trainee

In PT school, it can be difficult to treat a patient’s impairments without conforming to the medical model standards of “normal”. As students, we tend to have tunnel vision, hyper-focused on using a systematic approach when addressing impairments to make up for what we lack in clinical experience. We say we want to “normalize gait pattern”, or ensure children are hitting “normal developmental milestones.” Don’t get me wrong, identifying impairments is essential to helping patients function optimally, but it does beg the question: What does the word “normal” even mean? 

The definition of “normal” should revolve around the patient and his or her individual goals, rather than what is stated by the medical model. Instead of returning to “normal”, PT focuses on a patient’s return to the activities they love. This perspective not only ensures that patients receive individualized care but also eliminates the use of unnecessary comparisons to a standard norm. 

Minimizing the comparison of patient progress to the medical model’s definition of “normal” leaves space for a strengths-based approach. What does the patient do well and enjoy? How can we motivate them with the activities we choose and the strengths-based language we use? These are questions that we can ask ourselves to best serve our patients’ individualized needs.

While I do not believe there is ill intent behind the use of the word “normal”, its use can imply that there is something wrong with having a disability in the first place. As a healthcare professional, it is important to be mindful of the language we use in our practice. It’s inevitable that we’ll all make mistakes as practitioners but being conscientious about how the language we use can affect our patients is essential.

“Normal”...... What is “Normal”??? by Annette Malakoff, Disability Studies Trainee

The pharmacist handed over my prescription for an antibiotic to deal with my yearly

strep, smiled, and said, “This should get you back to normal in no time”.

Though this is not an uncommon phrase, nor was it the first time I had heard it, I

stopped short and gave her a second look. It was then that I realized as a Ph.D. student

of Disability Studies, I have come to understand this word as a judgment and an

idealized state of living - in constant opposition to abnormal. I am immersed in the daily

discourse surrounding the conceptualization of “normal”... But, what is normal? How did

this word come to represent our standard? And was the pharmacist making an innocent

statement… or falling into an ableist assumption of my reality?

Lennard Davis (2013), an international author, historian, and disability scholar

suggests that we live in a world of norms and use it in all aspects of our daily lives as a

measurement to rank intelligence, weight, health, etc. along a contextual line from

subnormal to above average (1). He further explains the history of “norm” originating as

a carpenter’s square to mean “perpendicular” and entering the English language to our

current understanding as “conforming to” or “regular” in the mid-1800s. French

statistician Adolphe Quetelet (1796-1847) applied the astronomer's “average law of

errors” for plotting star sightings to “average human bodies” and then conceptualized

the abstract “average man”. It was here that early statisticians (almost all eugenicists)

applied the “new” representation of the bell curve to the average human body (Davis pp.

4-5). A bell curve, by definition, has extremes with the mean or average in the center

(visual by Dr. Saul McLeod). With the introduction of standard deviation and quartiles,

the bell curve was divided into four sections and attributed with hierarchical low and

high standards. The high standard became our idealized “normal” providing eugenicist

justification of a “pure race” through extermination, and discrimination….and the

opposite extreme became “abnormal” or disabled (Davis pp.4-5).

Visual statistical representation By Dr. Saul McLeod, published in 2019 (A blue bell curve-shaped

mountain, divided into 6 sections labeled as “underperforming” on the far left, “meets expectations” at the

top of the curve, and “excellent performance” to the far right. Human caricatures performing various

activities are aligned with each numerical representation along the “X” axis.

American Disability Studies writer and activist Eli Clare (2017) also positions “normal” in

opposition to “abnormal,” suggesting white Western cultural dominance of worthy over

unworthy, and whole over broken (23). He sees “normal” as a tool for oppression by

which individuals are labeled and tagged without question or hesitation, defining paths

and positions of education, incarceration, institutionalization, and sterilization ( 23).

So then, how do we understand “normal” and why was I questioning the pharmacist’s

statement? The term has become common and is used without a second thought, but it

can also be understood as a bias, exclusionary, and judgemental. Disability Scholars

have questioned the validity of normal, reiterating its instability and fluidity as society

also changes and evolves. Davis further suggests it is the task of Disability Scholars to

create alternatives to and question the construction of normalcy, and not just include

disability as part of normal (12).

As one who identifies as disabled, “normal” will probably always make me turn my head

and wonder…but I write this in hope of a greater understanding of the potential for

negative connotations - and the acknowledgment of my own biases against the word.

Clare, Eli. Brilliant Imperfection: Grappling with Cure. Duke University Press, 2017.

Davis, Lennard J. "Introduction: Normality, Power, and Culture.” The Disability Studies

Reader 4, 2013, pp.1-14.

McLeod, S. A. (2019, May 28). Introduction to the normal distribution (bell curve).

Simply psychology: https://www.simplypsychology.org/normal-distribution.html

Transition Choices by Self Advocate Trainee, Eddie Brown

Hello. My name is Eddie Brown and I’m a self-advocate in the IL-LEND program. I’ve had learning disabilities my whole life, as well as a hearing disability. In school my main trouble is with reading and writing. It has never been easy and still isn’t. My high school teachers only saw my limitations. This really became clear as I was finishing high school and trying to figure out what was next for me. I think this is a common experience for people with disabilities. Either there is no support or there is only support for people who need daily life support. But a lot of us fall between the cracks and don’t have too many choices.

The first program that was recommended to me was the ELSA (Elmhurst Learning and Success Academy) program at Elmhurst College. This program is designed to support students who have learning and intellectual disabilities. They offer a lot of support to their students, but I found that a lot of it was too focused on things like consumer skills, independent living and how to interact with others. These were not skills that I needed support with. I felt like I would be back in high school with this program and not reaching my potential.

I decided to enroll at Harper Community College. Here I could take college courses, but I found that they couldn’t accommodate my academic needs. So the ELSA program gave me too much support but a community college didn’t give enough. It was a hard time because I knew what I wanted, but I was starting to think that it didn’t exist. I couldn’t be the only person who needed something in the middle.

I am very fortunate that I have a family that completely supports me and through their searching they found the Co-Op program at UIC. It gives me the chance to take college course without being separated into a space just for people with disabilities. I can interact with other students in class and they don’t see me as just my disability. At the same time the support I get is personalized to my own needs. One of the best things about the Co-Op program is that I feel like I’m the captain of a winning team. I have people I can turn to with questions about classes, about clubs, about academics and about my future. I’ve never felt so in control of my own choices. They really live by the slogan, “Nothing about us without us”. The Co-Op program is opening up more doors for me than I even knew existed. 

The UIC Co-Op program should be a model for other schools to follow and I hope that happens because there are a lot of people like me who struggled to find a place that was just right.

To learn more about the Co-Op program, here’s the link: https://ahs.uic.edu/disability-human-development/admissions-and-programs/co-operative-career-experience-certificate/

Why Telehealth Access is so Essential in Our Post-COVID World by Physical Therapy Trainee, Zoe Blomquist

As tragic and frustrating as the COVID-19 public health emergency was (and still is), there have been irrefutable advances in the technology realm with massive increases in the use of telecommunication. Many of us were able to continue attending school, business meetings, and doctor’s appointments with the help of videoconference services. Video calls benefited all of us while we maintained social distancing, but the expanded telehealth guidelines for Medicaid and Medicare provided a solution to inaccessibility of facility-based health care appointments. So, what are the major barriers to accessing in-person medical appointments and how can telehealth help?

This image depicts a man sitting on a couch with headphones and a laptop, speaking to a doctor online.

Source: Twistle by HealthCatalyst

Accessing doctor’s appointments via telehealth mitigates transportation issues and expenses. In areas where public transportation is unsafe and runs on a set schedule, it provides a safe and efficient alternative to meeting with healthcare professionals. Additionally, many people with disabilities may require caregiver assistance which necessitates additional coordination. Telehealth can help ease this stress and potentially get people scheduled sooner. For people with social anxiety or that need to avoid busy public places, online appointments are much more accessible. Not to mention, having the option to log-on from the comfort of your own home saves time, especially for those who must travel long distances to attend appointments.

While I can’t speak for all disciplines, I have noticed the benefits of telehealth services in Physical therapy (PT). PT is known to improve mobility and function through a variety of manual interventions, skilled analysis, and individualized exercise. At times this can be difficult to perform wholly via a computer screen, but telehealth can be very beneficial when health issues arise or transportation needs vary. Although telehealth may not be a perfect substitute to an in-person session, it’s a great option to maintain patient-provider relationships and monitoring throughout a plan of care. Medicaid covers telehealth PT in Illinois, but this is not the case in every state. Several bills are awaiting approval to expand telehealth access for a variety of health care providers. Speaking to your legislator about current bills like Expanded Telehealth Access Act (H.R. 2168) and Advancing Telehealth Beyond Covid-19 (H.R. 3030) can allow clinicians to provide telehealth services under Medicare, waive requirements, and expand access to telehealth for mental health services as well.

Benefits of telecommunication that helped so many of us through the toughest times of COVID-19 don’t have to go away as the pandemic decreases severity. The improved appointment access that we saw continues to be essential for people with disabilities and others with health or transportation barriers. Physical therapy services can benefit from improved telehealth access, as can many other healthcare disciplines. Let’s keep healthcare accessible.

A Mom’s Wish….How My Daughter Found her People by Family Trainee, Vicki Borlin

my daughter Tobi performing her ballet solo this July 

I cry when I see my daughter dance. I get looks. But I’ve earned those happy tears. Every mom’s wish, for her kid to fit in, finally came true for me. 

My daughter has autism, epilepsy, a rare genetic disorder and numerous other diagnoses. Her disabilities sometimes slow her down. She’s wanted to be a ballerina since she was three and in her head, she knows each move like a professional dancer. But making her body do all of those things is hard for her. 

When we put her in dance class as a little one, she fit right in. She wasn’t a prima ballerina but neither were the other girls. As she got older, her inability to do what the other girls were doing grew more obvious. Her last few years, the girls and teachers resented the fact that she couldn’t do the routines perfectly. She was made to feel like a failure. It broke my heart. All she wanted was to dance and to fit in. 

Then along came this spunky young teacher named Kati Hassall who had noticed there weren’t many opportunities in our area for kiddos with different abilities in the performing arts. So she started her own not-for-profit studio, Without Limits, and we joined immediately. 

Kati treated her like a prima ballerina. She complimented her, gave her tips, taught routines she could do well, gave her confidence. 

Then more dancers started coming to classes. And they all had their own challenges. They didn’t care if she spoke to them. They were kind anyway. They hugged her; they danced like her. They didn’t care that she wasn’t perfect.....they built her up! She finally had friends! 

Five years later, my girl is on competition cheer and dance teams and performs ballet solos. Her last recital, she was on the stage for five numbers. She has become the dancer she always wanted to be. 

And it’s all because one person believed that kids with disabilities could do anything.

To identify or not to identify? That is the question. By Kinesiology Trainee Emily Vaupel

Retrieved from https://dmv.colorado.gov/disability-identifier-for-driver-license/permit/identification-card

As the nation reeled at the death of George Floyd at the hands of police officers in 2020, the little-known death of young man during a 2019 interaction with Colorado police began to come into the public’s awareness. Elijah McClain, a sensitive autistic man, was a massage therapist and a self-taught musician who loved to play music for shelter animals as he believed that they found it comforting. Elijah was a young African American man. When approached by police on August 24, 2019, he stated “I am an introvert, please respect the boundaries that I am speaking.” (BBC News, 2021) Elijah had committed no crime but despite his appropriate request he was physically restrained by police with a now banned chokehold and injected with an overdose of ketamine by paramedics. As a result of the intervention, Elijah died. Had Elijah had the ability to inform the police of his disability would the interaction have ended differently?

Retrieved from https://www.bbc.com/news/world-us-canada-56134565

            To effectively respond to calls involving the disabled, law enforcement needs to be knowledgeable about disabilities along with appropriate disability specific interventions. A 2018 study found that out of officers surveyed, 72.2% had not received autism training (Gardner et al.,2018). A lack of autism or general disability awareness by law enforcement officers has been linked with increased arrest rates and death at the hands of the police. By the age of 28, the disabled have a greater likelihood to be arrested as compared to the nondisabled, with disabled African Americans having an even greater possibility (McCauley, 2017). One third of all police related deaths are disabled individuals. Individuals with neurodevelopmental disabilities and/or mental health disabilities represent the majority of deaths in this group (Diamond & Hogue, 2022).

What happens if the disability is an invisible disability?

            An invisible disability is a disability that is not visible from the outside and takes the form of a neurological, mental, or physical disability that is not easily identified from first appearance or interaction. Individuals with an invisible disability can appear abled. For example, a deaf person walking down the street with their back to police may not hear a directive and the behavior can be interpreted as noncompliance. In Elijah’s case, he was wearing a ski mask to stay warm while listening to his headphones. He was waving his arms around, which his family believes was him dancing to his music. When Elijah was non-responsive to the police coupled with what the police believed to be erratic behavior (i.e., waving his arm), Elijah was placed in a restraint (BBC News, 2021). What if there had been a way to Elijah to identify his disability to police by showing them his license?

            At this time there are two states that provide their residents the ability to have a disability symbol placed on their license or ID card. Alaska Statutes 18.65.310(m) and 28.15.111(d) were passed on May 15, 2017, which allowed individuals to designate on the driver’s license or ID card that they have a disability, visible or invisible (Invisible Disability Designator on an ID Card or Driver’s License, n.d.). Four years later on July 1, 2022, Colorado state instituted an act that “With the signing of HB 21-1014 (Disability Symbol Identification Document Act), Coloradans who might not be able to effectively communicate with first responders due to a cognitive, neurological, mental health, sensory needs, chronic illness, chronic pain and/or physical disability can choose to add a disability symbol identifier to their driver license or ID card to assist them when interacting with the police on their own” (Disability Identifier for Driver License/Permit/Identification Card, n.d.). It is important to note that those who elect to have a disability symbol placed on their license or ID card can have their state remove the symbol later at no cost to them.

The disability symbol comes with both advantages and disadvantages. In a time of crisis, an individual can provide first responders with an ID that identifies he/she/they as an individual with a disability. This allows officers the opportunity to reframe the interaction such that they are not dealing with criminal activity but assisting someone with a disability. The best-case scenario is that first responders are knowledgeable of the disability and appropriate interventions. However, having an ID with disability symbol does not ensure direct communication with law enforcement. In a time of crisis, would one be able to be of sound mind to provide the responders with an ID? What if the ID is left at home, does the individual now run the risk of not being treated with respect and dignity because of being unable to legally identify themselves as an individual with a disability? It is important to take into account that law enforcement are not the only ones that will see the disability status on the ID. An individual’s disability status will be visible to anyone who looks at ID (e.g., employer, academic institution, bank, creditor, etc.). Research into whether an invisible disability symbol on a disabled person’s ID correlates with decrease in arrests or death at the hands of law enforcement will be needed to assess the effectiveness of the invisible disability symbol. As Alaska’s and Colorado’s laws are new, it will be several years before this information may be available.

References:

Invisible Disability Designator on an ID Card or Driver’s License. (n.d.). Retrieved from http://doa.alaska.gov/dmv/akol/designator.htm

Disability Identifier for Driver License/Permit/Identification Card. (n.d.). Retrieved from  https://dmv.colorado.gov/disability-identifier-for-driver-license/permit/identification-card

Diamond, L. L., & Hogue, L. B. (2022). Law Enforcement Officers: A Call for Training and Awareness of Disabilities. Journal of Disability Policy Studies.

Elijah McClain: ‘No legal basis for detention that led to death. (2021, February 2021). BBC News. https://www.bbc.com/news/world-us-canada-56134565

Gardner, L., Campbell, J.M. & Westdal, J. Brief Report: Descriptive Analysis of Law Enforcement Officers’ Experiences with and Knowledge of Autism. J Autism Dev Disord 49, 1278–1283 (2019). https://doi.org/10.1007/s10803-018-3794-4

McCauley, E.J. (2017). The cumulative probability of arrest by age 28 years in the United States by disability status, race/ethnicity, and gender. American Journal of Public Health, 107(12), 1997-1981. https://ajph.aphapublications.org/doi/pdf/10.2105/AJPH.2017.304095?casa_token=w2LCtEb_r4QAAAAA:nSWVe5ge1CI-iGMcjBTN5aEmM2jIV2L0dLlhQctrbv7tO3RfNLVehUENfepeZQnCFDSSdmSBzsWU

Putting the “Therapy” Back into Physical Therapy by Kiley Hunt, PT Trainee

(Image includes a doctor and a patient sitting at a table. The patient is wearing an orange shirt and the doctor is wearing a white lab coat. The patient is talking, and a question mark is above his head, signifying that he is wondering if the doctor is listening. Courtesy of: Ian Conger)

“The other doctors wouldn’t even listen to me.” 

This is a heartbreaking phrase to hear, not only as a clinician, but as a human being. Yet, it is one of the most common phrases I hear as a physical therapy student. People often feel their doctors spend too little time with them or disregard their opinion. Many patients with chronic disability enter rehabilitation clinics frustrated and emotional after feeling unheard for so long. Rehabilitation therapists consistently spend 30 minutes to an hour with their patients, and this often facilitates strong patient-clinician relationships. From my experience, patients feel safe talking to therapists about their physical and mental struggles, and after a few sessions, people often love sharing stories about their personal lives. One of the most memorable physical therapy situations I have experienced was related to a mother bringing in her child who was diagnosed with Cerebral Palsy. She frequently attended sessions with her child, so the therapists had built a positive relationship with her and immediately welcomed her into the clinic. The mother settled in and broke down right away, expressing how overwhelmed she was with her child’s healthcare, bills, and responsibilities. While this made my heart ache for her, the first thing I thought was, “Am I even qualified to give her any advice?”. I had no mental health training and neither had any of the other therapists in the room. We had no way of helping her in any professional way besides referring her to see someone on her own time. 

              In the United States, 1 in 4 people have a disability, and many people will experience some sort of disability in their lifetime, whether it's temporary or permanent. Within this population, adults with disabilities are five times more likely to experience mental distress than adults without disabilities. In 2018, 32.9% of adults with disabilities experienced frequent mental distress, and many studies have shown that these statistics are only on the rise after the COVID-19 pandemic. When it comes to caregivers, studies show that 79% of caregivers of children with intellectual disabilities are at risk for clinical depression. Parenting a child with neurodevelopmental disorders has been shown to correlate with higher levels of anxiety, depression, and stress. Some studies show even higher risks of depression and anxiety in parental caregivers who struggle financially, making lower socioeconomical families at a high risk for mental health concerns. Unfortunately, most individuals with disabilities and their caregivers do not have sufficient access to mental health resources. With the constant doctor appointments, school, and therapy sessions, most people don’t even have the time to schedule appointments with a psychologist. This is especially true for children with disabilities, who must rely even further on their parents' work schedule. Also, the health professionals that people with disabilities interact with on a regular basis often have no mental health training to offer to their patients during treatment sessions, forcing them to find it elsewhere. Lastly, people with disabilities and their parental caregivers are dealt significant medical bills, medical equipment costs, and many other accessibility costs that come with disability such as accessible transportation. So, to expect family caregivers or people with disabilities to spend even more money on mental health services almost feels unfair when they already see so many medical professionals in any given month. 

              All of these reasons reinforce the importance of mental health training for physical therapists. Physical therapy is a career that requires pushing people through their physical struggles, and therapists are often recruited to a person’s medical team after some sort of physical decline or impairment diagnosis. This can be a very emotional time and having a therapist that can work on helping you physically and mentally could be especially helpful. We also know that mental health and physical health go hand in hand. It has been shown that depression increases risks for physical health complications such as diabetes and heart disease. This means that psychological training for physical therapists could not only improve their patient’s overall health, but it could help improve their clinical outcomes as well. This also shows that being able to assist caregivers in their mental health struggles can improve their physical health, which will improve both their quality of life and their ability to continue to care for their child. Overall, mental health is healthcare, and by leaving this out of our treatment sessions, we have forgotten to treat the most important part of each person. In the future, hopefully we can change the catchphrase from “My doctor didn’t even listen to me” to “I have never felt more heard”. 

https://www.cdc.gov/ncbddd/disabilityandhealth/features/mental-health-for-all.html

https://www.abilities.com/community/disabilities-mental-health.html 

https://www.cdc.gov/mentalhealth/learn/index.htm 

https://www.hindawi.com/journals/ijfm/2011/534513/

Autism in Medical Education- Does it exist? by Medical Trainee, Rebecca Spasari

As a fifth year Child Neurology resident, I am completing my ninth year of medical training after graduating college. While finishing this process and beginning my experience with LEND, I cannot help but think about how difficult it has been to find resources that allow me to prepare for caring for people with disabilities up until this point. During my first year of medical school, after completing a week-long course on cystic fibrosis, a condition that impacts 1 in 3,000 white newborns and is even more rare in non-white populations, we spent an hour learning about both ADHD and autism , conditions that each affect many more individuals. The National Health Interview Survey (NHIS) had the prevalence of ADHD in children 4-17 years old as around 10.2% of the population in 2016 and the CDC reported that in 2018 that the prevalence of autism was 1 in 44 children. I remember angrily googling these statistics at the end of the lecture and feeling so hopeless. I continued searching for the disability education I wanted and found some during my pediatrics rotation. I loved neurology and was planning to care for adults with disabilities with a focus on autism through a neurology residency. I told one of the adult neurology residents this and she responded, “we don’t do that – maybe you should do pediatric neurology.” A brief panic attack followed as it was close to residency application time, but it led me to the pediatric neurologist at my medical school who fortunately had a passion for caring for autistic adults.

I came into medical school knowing that I wanted to complete my training and care for people with disabilities, but most people come into medical school not knowing what they want to do and use the training received to pick a specialty. When thinking about the long waitlists to see child neurologists, developmental behavioral pediatricians, and child psychiatrists because of workforce shortages, I wonder if this is because of the way we are taught from our first year of medical school. How would someone develop an interest in autism if they have barely heard about it? I received most of my training on autism in pediatrics rotations and with the child neurologist. It was very clear to me throughout my training that there was a perception that only pediatricians need to know about autism.

There have been studies on trainee knowledge of autism that have shown shocking limitations of graduating medical students and residents. One study at the University of Alabama looked at medical students and pediatric residents and their comfort with caring for a child with autism in an acute care setting. It found that in both pediatric residents and medical students, more than 85% of responders felt less than somewhat informed on management of acute illness in autistic patients. In other words, only 15% of pediatric residents and medical students felt comfortable taking care of autistic patients. There have been other studies based on surveys of pediatric residents, but studies have not focused on the knowledge base of adult practitioners. Based on my experience, I suspect the results would be quite alarming. There have been efforts to create a curriculum for clinicians including the Autism Case Training: Developmental Pediatrics Curriculum which has been piloted in several pediatrics residencies with success. This is very exciting change in the right direction. The next step should be moving this curriculum earlier in training to the medical students so that all future providers will know that no matter what specialty you choose, you need to learn about autism. I think this early introduction can also serve as a form of recruitment to convince medical students to pursue disability focused specialties that have waitlists that last longer than a year.

References:

1.    AMA J Ethics. 2015;17(4):318-322. doi: 10.1001/journalofethics.2015.17.4.medu1-1504.

2.    Austriaco, Kristine, et al. "Contemporary trainee knowledge of autism: how prepared are our future providers?." Frontiers in Pediatrics 7 (2019): 165.

3.    Dhuga, Yasmin, et al. "Developing undergraduate autism education for medical students: a qualitative study." BMJ paediatrics open 6.1 (2022).

What’s all the hype over AAC devices? Written by Amanda Goldstein, SLP LEND Trainee

Hi! My name is Amanda Goldstein, and I am a graduate student in the field of Speech-Language Pathology. Welcome to my blog post! Throughout my undergraduate experience, people continued to ask me what an “AAC device” is and why I wouldn’t stop talking about it. So, today I am here to explain it!

AAC stands for Alternative and Augmentative Communication, referring to an inclusive form of communication that encompasses more than just oral speech. As ASHA describes it, augmentative means to add to someone’s speech and alternative means to be used instead of speech.

There is a great range of different types of AAC including sign language, gestures, picture symbols, speech generating devices, and more. AAC devices can be used by many different people who have many different needs. AAC devices are commonly brought up when discussing autism, as may autistic individuals do not use oral speech; by providing these individuals with AAC devices, they have a platform for communication. Additionally, people with degenerative diseases such as Alzheimer’s disease, Parkinson’s disease, or Huntington’s disease may benefit from using an AAC device if they begin to lose motor speech; by providing them with an AAC device, they will also have a platform to communicate. Moreover, stroke patients or patients with Traumatic Brain Injuries (TBIs) can be introduced to an AAC device to have an accessible form of communication before regaining motor speech musculature. The list can go on and on but ultimately it should be the user and their family’s decision. A common way to categorize AAC devices is by separating them based on “low tech” “mid tech” and “high tech”, so that is what I have done to provide some explanations and examples.

Low Tech AAC

Low tech AAC refers to a method of communication that isn’t electronic but requires some equipment. This option may be utilized because it can oftentimes be quicker to learn how to use a low-tech device. Additionally, there are less distractions that come with working with a low-tech device. On the other hand, these devices may also be limited in giving the user flexibility in terms of what they can communicate. Examples of low-tech devices include a communication book made up of many pages with photos, a pen and paper, an alphabet board, and symbols written down on different index cards. In these methods, a user can select what they want to express by pointing to photos or symbols.

Picture: an example of a communication book taken from https://www.communicationcommunity.com/aacfileslowtech/

Mid Tech AAC

Mid-tech AAC devices are electronic devices that are battery operated. These devices are more complex than low-tech AAC devices but not as complex as the high-tech AAC devices. Someone who’s looking to work with a high-tech AAC device could start off with one of these and then progress to a high-tech device. An example of this is “GoTalk” which is a pre-programmed device that can messages based off the user’s selection.

Picture: an image of “GoTalk” taken from https://www.communicationcommunity.com/aacfileshightech/

 High Tech AAC

High tech AAC devices are the most complex form of AAC devices, consisting of electronic devices with quite advanced functions.  This could be in the form of an iPad that has many different pages and sections, whereby the user has more options and flexibility in what they can express. These have become so high tech that some AAC devices can be utilized by an eye gaze to control speech. This is very helpful in users who may be paralyzed or have minimal limb movement.

Picture: Stephen Hawking using a high tech AAC device that he controlled with his eyes taken from https://www.communicationcommunity.com/aacfileshightech/

Something worth noting is that I mostly highlighted the benefits of these devices; however, there are also many limitations to consider. For instance, some individuals might not have access to internet that is required with some devices. Additionally, some of the devices may be prone to accidents if getting dropped, getting wet, etc. Moreover, it can be difficult and frustrating for clients to have to always remember to have an AAC device on them to communicate. The examples I provided are also not an exhaustive list and I’d encourage you to do some exploring if you’re interested! Lastly, it is pivotal to think about how the users of these devices are included in the design of the devices and how we can enable them to become more part of the process.

References:

https://www.communicationcommunity.com/aacfileshightech/

https://www.communicationcommunity.com/aacfileslowtech/

https://medium.com/@dmahmarian/a-history-of-autism-and-aac-9a2b321b01f0

https://allaboutaac.wordpress.com/about-aac/3-2/

“Learning Disabilities: A Tale of Two Perspectives” By Colleen Rusciolelli, Developmental and Behavioral Pediatrics Fellow

(Picture: Dark blue background with different sized blue spheres with central black holes. Courtesy of: https://earthsky.org/astronomy-essentials/definition-what-is-dark-matter/)

“This isn’t done! This isn’t done! This is incomplete! He is reading well below grade level.” As my husband and I sat across from my son’s first grade teacher I tried to contain myself from yelling back. “THEN WHAT IS HE DOING?”  It just wasn’t making sense. This was the child that asked me if I could explain “dark matter” to him a few weeks prior (something I promptly googled and still am not sure I can accurately explain). This was the child that drew a Pangolin (pre-COVID19) as his favorite animal the first week of kindergarten and had to explain to his teacher that he was in fact saying pangolin not penguin (also worth googling-they are quite interesting). Things were not adding up. As a mother I was worried, frustrated, and sad.  As a pediatrician I was asking myself how I missed this. 

            As a pediatrician, the checklist started going off in my head. He needs to be evaluated for Attention Deficit Hyperactivity Disorder (ADHD), he needs to get a school evaluation to see if he needs an Individual Education Plan (IEP). Should he see a developmental pediatrician? As a mom, I just wanted to give him a great big hug and let him know it was going to be okay. How stressful it must be to sit in a classroom where things were not making sense, being constantly corrected and feeling not good enough. He was diagnosed with ADHD but didn’t qualify for an IEP because although his reading was behind “it wasn’t delayed enough” (story for another blog). I received great advice from a close friend, a mother of four, and a developmental pediatrician (yes in my eyes she is a bit of a rockstar). She said he could have a learning disability and you should get further testing. She was right, several months later he was diagnosed with dyslexia. We got him connected with an amazing reading specialist in our community who used evidence based techniques which his brilliant brain latched onto. Now, several years later we can’t pull his head out of a book and he is reading well above grade level and still asking me questions I need to google.

Why am I sharing this? I want others to know a lot of times ADHD doesn’t occur in isolation. Learning difficulties can be seen in up to 50% of children diagnosed with ADHD. They are also more at risk for other conditions such as depression and anxiety. You have to look at and treat the whole child for them to thrive. As a general pediatrician, I was trained to evaluate, diagnose and treat ADHD. I was not trained to diagnose learning disabilities and unfortunately we don’t have consistent screening systems available and rely heavily on schools to pick up learning disabilities-something that needs to change. Learning disabilities pose a major threat to a child’s short and long term health and need to be treated as such.

Finally, of all learning disabilities, dyslexia is most common and affects up to 20% of people. We need to examine how schools are teaching our children to read. We need to ensure all schools are supporting their teachers and students by providing training and instituting an evidence based reading curriculum proactively. First you need to learn to read so that you can read to learn.  Lastly, as a pediatrician, a mom, and the daughter of a retired children’s librarian-go check out your local library. They have amazing programs and resources for children (and adults) and are often a source of wonder and awe for all ages.

References:

Sanfilippo J, Ness M, Petscher Y, et al. Reintroducing Dyslexia: Early Identification and Implications for Pediatric Practice. Pediatrics. 2020;146(1):e20193046

https://www.additudemag.com/half-of-all-kids-with-adhd-have-a-learning-disability-or-related-condition/

https://www.nytimes.com/2022/09/01/opinion/us-school-reading.html

Great resources to check out:

https://dyslexia.yale.edu/dyslexia/dyslexia-faq/

https://www.readingrockets.org/article/learning-read-reading-learn

https://reachoutandread.org/what-we-do/resources-2/

https://www.chipublib.org/kids/

The Climate is Changing, and so Should We! by ABA Trainee, Meredith Matthews

Every article written on the topic of climate change appears to begin in the same way: Global surface temperatures are rising, the ice sheets are shrinking, weather patterns are changing, and human behavior is likely to be the one to blame. While it is important to disseminate the research on topics such as climate change, the conversation needs to shift from talking about who has caused the overall warming to who is going to respond to the overall warming.

Applied behavior analysis (ABA) is a science that is focused primarily on improving specific behaviors and is one rooted in empirical research. ABA then applies these concepts to understand and work within human behavior. Within the field of ABA, over 70% of its professionals work with individuals with autism spectrum disorder (ASD). While I believe that it is great that individuals with ASD are able to receive the services they need, I believe that there is more that our science can contribute to the scientific community.

Considering behavior analysis is specifically adapted to treat the contributing factors involved with a particular problem, there is perhaps no other scientific field that has more to contribute on this shift from who caused the overall warming to who is going to respond to the overall warming. In order to begin reversing the effects of climate change, large scale behavior change is required. Considering the field of behavior analysis utilizes and has refined the principles of behavior, I believe that this field would be in a great position to begin working within an interdisciplinary team to solve the overall problem of climate change.

To be a privileged individual is to live a life with a particular advantage, usually one that is not easily quantifiable. In addition, often times individuals living with privilege do not recognize their privilege whereas when the privilege is absent it seems to have an effect on everything you do. Take for example ableism, which is the discrimination against people with disabilities based on the idea that individuals without disabilities are in some way superior. Eco-ableism is the extension of ableism into the environmental movement from activists who fail to take disabled perspectives into account.

While climate change continues to act as a threat to all of us, it will certainly not affect all of us at an equal rate. When I began thinking about how the catastrophic weather events and climate change more broadly will affect individuals across the world, I started to wonder how disabled individuals, who according to the World Health Organization (WHO), make up 15% of the global population, would be impacted by climate change.

So, how does climate change affect disabled people?

Broadly speaking, individuals with disabilities are both socially and economically disadvantaged compared to individuals without disabilities because of a variety of systemic factors. In the event of a climate crisis, disabled individuals are in a much more vulnerable position than able-bodied individuals. For example, decisionmakers may exclude disabled individuals from preparation beforehand which can lead to difficulties if emergency warnings or evacuations are not designed with accessibility in mind. In the event of an evacuation due to a catastrophic weather event such as a hurricane or tsunami, individuals with disabilities may require access to early and specialized transportation to the evacuation site, continued physical, behavioral, and social support, and consistent access to medical care.

Changes in the Earth’s climate is a significant problem which must be managed rapidly because as the Earth continues to warm, these catastrophic weather events are expected to increase in both their frequency and magnitude. This will further necessitate the usage of additional supports for individuals with disabilities.

More research and planning are undoubtedly needed if proper solutions are to be made regarding the climate crisis, and I believe that the field of ABA can be a contributing component of those solutions. Further, it is imperative that any research, planning, or decision making must incorporate disabled populations to ensure these decisions are inclusive and accessible for all.

At the end of the day, climate change is a global problem and will require a global, interdisciplinary, and inclusive solution, and this solution must be found and acted upon soon, if we as a society hope to prevent the climate point of no return.

The Good and the Bad of the “Psychiatry Bible”: Controversy Around The DSM by Social Work Trainee, Madeline Anne Hunter

The Diagnostic and Statistical Manual of Mental Disorders, or DSM, has become the bread and butter for mental health professionals since its first publication in 1952. It is the largest classification system for descriptions and symptoms used to diagnose mental health disorders. This manual has undergone seven renditions, with the most recent release being the DSM-5TR published in March of 2022. As a student only a few months away from graduating with a Masters in Social Work, I am tasked with learning the content of this document inside and out. With this, I have been introduced not only to the evolution of this text, but also the strong opinions that people have about it. I have witnessed multiple heated discussions firsthand, inside and outside of the clinical setting. Over time I have noted a few key arguments that are made repeatedly by professionals.

Before touching on the criticisms, we should first consider the positives that coincide with the widespread usage of the DSM. This document was the first to establish a universal framework for discussing mental disorders in the United States. This has bridged communications by alleviating the need for interdepartmental translation. The standardization of criteria has also brought about positive developments in the evolution of best practice expectations. There is a better understanding of the symptoms associated with particular diagnoses which permits researchers to conduct studies, informing most effective treatments for particular disorders.

Despite several renditions over the years, this document continues to be shrouded in controversy. One of the most prominent setbacks to the standardization of the DSM is that it has led to higher risks of misdiagnosis and over diagnosis of clients. Insurance companies often require the categorization of patients in order to verify the need for treatment, and will often require a diagnosis within the first meeting with a healthcare professional. Additionally, the usage of this manual requires labels to be put on people who exemplify particular symptoms and behaviors. It may be helpful in some situations, for instance this gives mental health clinicians the ability to look back on previous diagnoses and provide better understanding of prior treatment effectiveness. However, these labels never go away, and it can often lead to clients being stigmatized on the basis of a prior diagnosis. Another significant argument is the one-dimensionality of the DSM. This text oversimplifies behaviors in a way that appears to disregard person-in-environment influences. Consequently this can lead to the unconscious shift of thinking of people as people, to thinking of people in regard to their diagnosis.

This document is currently formulated in a way to assist clinicians as they carry out their work. It aims to provide descriptive language regarding the emotional functioning and behaviors engaged in by clients, affecting their day to day lives. It is important to remember the Diagnostic and Statistical Manual of Mental Disorders is a tool, and is not perfect. The DSM-5 TR drawbacks should be considered at all times, and usage should be supplemented with additional diagnostic tools, such as the Psychodynamic Diagnostic Manual. Only through this can clinicians examine a broader spectrum of lived experiences and get a better understanding of the client as a person, and better cater the treatment process to fit their needs.

References

Cherry, K. (2022, May 30). How mental health professionals use the DSM Today. Verywell Mind. Retrieved September 8, 2022, from https://www.verywellmind.com/the-diagnostic-and-statistical-manual-dsm-2795758

DSM history. Psychiatry.org - DSM History. (n.d.). Retrieved September 8, 2022, from https://www.psychiatry.org/psychiatrists/practice/dsm/history-of-the-dsm

DSM. Psychiatry.org - DSM. (n.d.). Retrieved September 8, 2022, from https://psychiatry.org/psychiatrists/practice/dsm

My copies of the DSM-5 (2013) and DSM-5-TR (2022), Credited to Author

No, You’re Not Just “So OCD,” And Here’s Why You Shouldn’t Say So, by Psychology Trainee, Bonnie Shoemaker

As of the year 2022, it’d be hard to believe if you hadn’t heard it, ­– if you hadn’t read about it in a friend’s post on Facebook, if you hadn’t seen it thrown about in the text of a photo on one’s Instagram story. You, yourself, may have even staked claim to it, – a seemingly innocent explanation for why you insist on color-coding your closet, or refuse to leave the house without hand sanitizer. The it that I’m referencing is OCD, or Obsessive Compulsive Disorder, and no, more likely than not, you do not meet the diagnostic criteria for it.

Obsessive Compulsive Disorder (OCD) is a well-known mental illness, but it is one that is easily misunderstood because of the way that it is often portrayed in the media and talked about in everyday speech. However, OCD is so much more than excessive hand-washing or extreme organization. OCD is characterized by involuntary, recurrent, obsessive thoughts and repetitive, compulsive behaviors, and is usually only diagnosed as such when these behaviors interfere with daily life. Most people with OCD have both obsessive and compulsive behaviors, but as with any mental illness, OCD manifests differently in different people. As you can see, OCD is a complex, multifaceted disorder with a range of symptoms that at times, can be quite severe, and even disabling. In fact, a disproportionately high number of those affected with OCD, about 50% of all cases, fall into the severe category, with less than a quarter being classed as mild cases. According to the World Health Organization (WHO), OCD can be so debilitating and disabling to some that in 2019, OCD ranked in the top ten of the most disabling illnesses of any kind, in terms of lost earnings and diminished quality of life. This same report, also, indicated that OCD, at this time, was the fifth leading cause of disease burden for women aged 15 – 44 in the developed world. 1 So, when people misuse the term “OCD,” and make reference to being “So OCD,” they not only fail to acknowledge the legitimacy of OCD as a disorder, they, too, fail to realize the lasting impact it has on those with it.

Still, you might be wondering… what’s the real harm is using OCD synonymously to other terms, such as being clean and organized, or occasionally, even cracking a joke about OCD. After all, it’s just a joke, right?

Unfortunately, for about 2.2 million adults in the United States, alone, OCD is no laughing matter. 2  When one jokes about OCD, or any mental illness/disability, the unintentional consequence of their actions is that real people’s experiences are diminished to nothing more than an idiosyncrasy or quirk, – habits that warrant laughter, rather than treatment. This is not only harmful to those with the disorder or disability, but it can actually hurt their chances of seeking help, should they so need it.

May it be out of fear of being stigmatized, or a misunderstanding of what OCD actually is, studies have shown that it takes an average of 14 to 17 years from the time symptoms of OCD begin for someone to obtain appropriate treatment. This should not be the case, and it cannot continue to be.

To fight against the aforementioned stigma and the widely prevalent misunderstandings about what OCD actually is, it is imperative that we write OCD out of our descriptive language. So, if you find yourself wanting to post on social media about how you just “organized your spice drawer… again,” because you’re “So OCD,” choose to not. If your friend jokes about how “OCD” she can get about certain things, don’t just laugh it off. Consider gently correcting them, offering a more appropriate word for them to use (of note, I use: particular). Then, go a step further. Educate yourself of OCD and other mental illnesses/disabilities, so you know what to look for, and can best correct any future misperceptions that you encounter.

As a Clinical Psychologist, in training, just know: that if you, or someone you love, struggles with OCD, you are seen, you are heard, and your lived experience is valid. Don’t let jokes that you hear, or stigmas that may exist, get in the way of seeking treatment, or of encouraging your loved one to do so.

For more information about OCD, or for treatment resources, I encourage you to visit: https://www.treatmyocd.com/.

References:

1.     https://www.ocduk.org/ocd/world-health-organisation/.

2.     https://www.everydayhealth.com/news/when-its-not-just-ocd/?pos=2&xid=nl_EverydayHealthMentalHealthandMoodDisorders_20171015.

3.     https://iocdf.org/wp-content/uploads/2014/10/What-You-Need-To-Know-About-OCD.pdf.

Living in a Medical Model World by Occupational Therapy Trainee Lizzy Jang

I asked my sister, a 3rd year ophthalmology resident, “Have you heard of the medical model?”

“No, what is it?” she replied. 

It surprised me that something that I had learned in my first few weeks of being an occupational therapy student had not been taught in my sister’s medical school or residency. If she had learned about different models and frameworks, they were not considered important enough to be drilled into her mind and to inform her practice. I was taught that the medical model was widely used in the healthcare system and was useful in managing a range of illnesses and traumatic conditions. But the model often falls short when it comes to understanding disability as something to accept, celebrate and accommodate. This is where models such as the social model of disability may be more fitting, exploring the fit between individual and environment and focusing on changing the surroundings to enable individual participation. My sister’s confusion in response to my question seemed to confirm my fears that the medical model was the golden (if not only) standard in the hospital system. So prevalent was the medical model, that practitioners like my sister did not even realize that they were operating in it. 

The social model of disability is a framework I am still trying to understand. I see snapshots of it come into play when I see kids in clinic for occupational therapy. Kids arrive to our clinic gym with a unique set of challenges, often in receiving input and responding to their environments. Many are hypersensitive to stimuli, while others are hyposensitive, and others are a mixture of both depending on the stimulus. For example, a kid who struggles to integrate sensory information may struggle to understand where their body is in space, making it really hard to coordinate their legs to jump rope. In another case, a hyposensitive child, under-reactive to their environment, may need extra sensory stimulation to stay focused on an activity, which may manifest as seeking swinging and spinning activities or stomping their feet. 

The closer I looked and started to understand how each individual mind and body worked, I was able to identify specific activities that were calming, exciting, focusing. Adaptive. Each child had a different sensory fingerprint, a unique code of activities and sensations that engaged them. The more we understood the set of input that matched their sensory fingerprint, the closer we got to the right fit between the environment and individual to support participation and engagement. 

One afternoon I was working with a 6 year-old child who had been coming to clinic for several months to practice communication and motor coordination. We would start every session with a sensory warm-up activity, usually swinging and spinning on a platform swing. This afternoon when he arrived at clinic, he ran towards the swing, lay flat on his back and said, “Spin me, please.” First I smiled, then it dawned on me that we had cracked the code, a sensory fingerprint that was unique to him. Here was an activity that we had collaboratively identified as one that grounded him before engaging in more purposeful play and communication. The environment was supporting him.

As occupational therapists, we learn to navigate various frameworks to understand clients and their goals. We target performance and competence, assisting our clients to do the things that they want to do, whether it’s dribbling a ball so they can play with peers, or to develop handwriting skills so they can progress to the next grade in school. We learn to use the medical model to understand various injuries, diagnoses, and impairments. However we are also learning the countless ways to target participation, which can look different than the performance or competence that we anticipated. Participation can look like improved handwriting, but it might also look like a modified classroom with modified tasks that the student can readily engage in. It might also look like a child spinning on a platform swing. As I learn to navigate the hospital system and realm of the medical model as an occupational therapist, I expect to come across practitioners, to whom the medical model has been the only provided framework, who may question my clinical judgment and approaches to therapy. When this happens, I hope to keep the medical model in one hand and the social model in the other, critically applying what best serves my clients to engage in their environments in a meaningful way.